The Battle
Posted: Sun May 26, 2019 3:34 pm
WED has been very tough for me. It’s been about 3 years since I was officially diagnosed. It’s mainly at night, on one region of my back. It’s not intense, but enough to keep me up at night.
If others don’t mind I’d like to use this as a space to unload some of my thoughts. I’m working through a lot of things and I have a hope, but it is still a battle everyday. Honestly, my 5 month old gives me the strength to stay strong every day and never lose sight of my goals - to one day run again.
In my previous life, I lived and trained like an athlete, I just wanted to maximize potential of my body. Whether it was cruising through the city on my bike or hiking some mountain, it was a feeling I couldn’t get enough of. But around the same time I got WED, I incurred a knee injury. The combination of no sleep and a tendon injury in my right knee, made the progress incredibly slow. Unlike other parts of the body, the tendon receives very little blood flow, making it more difficult to heal. Unable to get control of my sleep, the injury became chronic. Doctor after doctor, nobody could figure out why my knee wasn’t recovering. No structural damage in imaging, consistent PT, it was unexplainable. But nobody every bothered to ask about my sleep, why would they?
Around the same time, there were a lot of things happening. I met my current wife and we had just moved in together. It wasn’t until we started sleeping together that I really took an interest in my sleep. The way she just slipped off with such ease every night and woke up so refreshed was amazing to me. It was like magic. I knew something was wrong. In comes the sleep studies and doctors. In come the doctors, the the blood tests, the sleep tests, the medications. It took about 1.5 years for me to find Dr. Early and get on some consistent medication. Even then, it’s been up and down trying figure out something that is going to work consistent.
Although I found Dr. Earley, it was a tad too late. My good knee went bad because I was overcompensating for too long and now I could barely walk a block. Because my knees couldn’t bear the weight, my back would take a lot of the stress of standing or walking Causing it to go out all the time. There were frequent days where I could barely leave my room without being in excruciating pain. Again, the doctors couldn’t figure it out. My body lost all its muscle, I stopped going to work, I stopped seeing friends, I went to a very dark place. On top of this I moved into a job I hated and my wife got pregnant. Now I was trapped in a job I hate and a body that couldn’t function. Not being able to help her during pregnancy took away every piece of confidence I had left.
During all this, I had a few bouts where the meds would work for a bit or the WED would go away for a few weeks. When that would happen, I would recover fast. Around this time last year, I was walking pain free and got back into the gym, but my sleep went out of control and I spiraled back down. Then I started asking my doctors about sleep and recovery. None of them felt it could be my sleep causing the issues, it had to be mechanical. But, it just didn’t add up. I knew they had the best intentions, but it would really be up to me to figure this out.
I started reading intensively about sleep, WED, body mechanics, stress, etc. For reasons of my own, I never wanted to accept WED would be with me forever, I felt like I could cure it. Because it is not found in animal
Models, I felt that it was an epigenetic disease caused by various environmental and mental stresses in the modern human life. My theory was that, because our bodies and brains aren’t adapted for modern life, we are in constant conflict (stress) with our environment. And for a certain few, this causes disregulation somewhere in body or brain, throwing off our iron/dopamine/glutamate,etc. I believed that is why there are so many different forms and triggers of RLS, because it was really related to our environmental and mental state. But as started digging deeper, I found out that my father would stay up all night. It seemed he had some form insomnia. He died 10 years ago, but, from what’s gather, I think he had RLS. After probing My cousins, they seem to have sleep issues as well. And, there are many stories of my fathers family, back in Pakistan, staying up through all hours of the night. My mom told me that the house didn’t come alive until after 12 midnight.
So here I now, my son is 5 months. My knees are still bad but my back doesn’t go out. Each day I track my sleep and stress meticulously, I continue to experiment with different things to optimize my sleep with the hope that Nobody will ever feel as lost as I was. Everyday is a battle but, right now, I’m winning.
My circadian rhythm got out of track, so right now I’m doing sleep restriction therapy to get my sleep efficiency back. It’s brutal, but, after a week, I’m already sleeping much quicker. My current meds have been holding stable, although I foresee a switch from methadone/lyrica to mirapex/lyrica in order to improve sleep quality.
As much as I hate to say it, WED has made me a stronger and better person. It broke me and may break me again, but it will never defeat me. If it is alright with you, I’d like to continue sharing my thoughts here.
Best,
Oozz
If others don’t mind I’d like to use this as a space to unload some of my thoughts. I’m working through a lot of things and I have a hope, but it is still a battle everyday. Honestly, my 5 month old gives me the strength to stay strong every day and never lose sight of my goals - to one day run again.
In my previous life, I lived and trained like an athlete, I just wanted to maximize potential of my body. Whether it was cruising through the city on my bike or hiking some mountain, it was a feeling I couldn’t get enough of. But around the same time I got WED, I incurred a knee injury. The combination of no sleep and a tendon injury in my right knee, made the progress incredibly slow. Unlike other parts of the body, the tendon receives very little blood flow, making it more difficult to heal. Unable to get control of my sleep, the injury became chronic. Doctor after doctor, nobody could figure out why my knee wasn’t recovering. No structural damage in imaging, consistent PT, it was unexplainable. But nobody every bothered to ask about my sleep, why would they?
Around the same time, there were a lot of things happening. I met my current wife and we had just moved in together. It wasn’t until we started sleeping together that I really took an interest in my sleep. The way she just slipped off with such ease every night and woke up so refreshed was amazing to me. It was like magic. I knew something was wrong. In comes the sleep studies and doctors. In come the doctors, the the blood tests, the sleep tests, the medications. It took about 1.5 years for me to find Dr. Early and get on some consistent medication. Even then, it’s been up and down trying figure out something that is going to work consistent.
Although I found Dr. Earley, it was a tad too late. My good knee went bad because I was overcompensating for too long and now I could barely walk a block. Because my knees couldn’t bear the weight, my back would take a lot of the stress of standing or walking Causing it to go out all the time. There were frequent days where I could barely leave my room without being in excruciating pain. Again, the doctors couldn’t figure it out. My body lost all its muscle, I stopped going to work, I stopped seeing friends, I went to a very dark place. On top of this I moved into a job I hated and my wife got pregnant. Now I was trapped in a job I hate and a body that couldn’t function. Not being able to help her during pregnancy took away every piece of confidence I had left.
During all this, I had a few bouts where the meds would work for a bit or the WED would go away for a few weeks. When that would happen, I would recover fast. Around this time last year, I was walking pain free and got back into the gym, but my sleep went out of control and I spiraled back down. Then I started asking my doctors about sleep and recovery. None of them felt it could be my sleep causing the issues, it had to be mechanical. But, it just didn’t add up. I knew they had the best intentions, but it would really be up to me to figure this out.
I started reading intensively about sleep, WED, body mechanics, stress, etc. For reasons of my own, I never wanted to accept WED would be with me forever, I felt like I could cure it. Because it is not found in animal
Models, I felt that it was an epigenetic disease caused by various environmental and mental stresses in the modern human life. My theory was that, because our bodies and brains aren’t adapted for modern life, we are in constant conflict (stress) with our environment. And for a certain few, this causes disregulation somewhere in body or brain, throwing off our iron/dopamine/glutamate,etc. I believed that is why there are so many different forms and triggers of RLS, because it was really related to our environmental and mental state. But as started digging deeper, I found out that my father would stay up all night. It seemed he had some form insomnia. He died 10 years ago, but, from what’s gather, I think he had RLS. After probing My cousins, they seem to have sleep issues as well. And, there are many stories of my fathers family, back in Pakistan, staying up through all hours of the night. My mom told me that the house didn’t come alive until after 12 midnight.
So here I now, my son is 5 months. My knees are still bad but my back doesn’t go out. Each day I track my sleep and stress meticulously, I continue to experiment with different things to optimize my sleep with the hope that Nobody will ever feel as lost as I was. Everyday is a battle but, right now, I’m winning.
My circadian rhythm got out of track, so right now I’m doing sleep restriction therapy to get my sleep efficiency back. It’s brutal, but, after a week, I’m already sleeping much quicker. My current meds have been holding stable, although I foresee a switch from methadone/lyrica to mirapex/lyrica in order to improve sleep quality.
As much as I hate to say it, WED has made me a stronger and better person. It broke me and may break me again, but it will never defeat me. If it is alright with you, I’d like to continue sharing my thoughts here.
Best,
Oozz